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Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

I think what really throws me thinking about this is that if he weighed 5-10 lbs heavier the docs probably wouldn't even blink at him eating like mad and not gaining any weight and I think its perfectly normal (or well it is here in MY house) for a child his age to eat everything in sight and gain basically nothing. Both my boys have/are doing it between 12-36 months and they gained very little weight during that time (Alex gained 4-5lbs total in those 2 years, but gained 3 of those the last year and Mason hasn't gained any weight from about 11 months and he's 16 months now). The difference really being is they gained a ton of weight in their first year.

Hopefully the speciallist can figure it all out for you and hopefully it will just end up being how he is!

Erin

Moderator - First Time Moms, Parents of Preemies
Interm Chapter President - St. Louis/Missouri
Mommy to Alex and Mason

Robyn, I'm sorry to hear about your concerns. Before reading your update, I was going to suggest malabsorbtion issues. If he's eating more than your 5yo, you should be seeing some sort of gain. Please let us know what the tests show! You'll all be in our thoughts!

I took Ollie in for a weight check on Friday. Going in to the appointment, I thought for sure that his ped. would think he was doing fine. He had gained about a pound since September, his last well-baby check. Unfortunately, although he gained, he didn't gain enough to keep up with his curve and has fallen even further behind. Augh! Not exactly what I wanted to hear!

His ped and I spent a long time discussing what could be causing his lack of weight gain. He is very active and we know he uses extra calories due to a rapid respiratory rate and other lung issues. It just doesn't seem like that can be the whole problem. He has been eating a ton lately (more than our 5 year old) and is constantly asking for food. We are going to be referred to a GI specialist to begin looking at malabsorption disorders. We also had some labs done on Friday that might shed some light on this. I just don't think he can having anything too terribly wrong. He's totally caught up with his development and is otherwise completely healthy. I asked the ped if we could just "ignore" this and accept that this is the way he is. She said "no, there's something going on here." At least she's not blowing us off!

Do you have Oliver in an early intervention program? The developmentalists in EI can evaluate him to see if he is meeting all of his milestones, etc, and can refer you to PT, OT, etc as needed. I think they help out with dietary issues as well.

It is a free program and usually open to any kids until they are three.

We just entered this weight issue with Janie. She went in for a weight check today. She not only dropped off the chart but she also plataued in weight, length and head. Her doc suggested some of the same things like adding oil to baby food and upping her calories. This really is the first time I have been concerned about her growth because before now she always followed the curve. The thing is that my kids are super small. My oldest (36weeker) was 15lbs and 24.5 inches at a year! I never worried about him because his development was fine.

My questions for you are; does Oliver follow his curve? How is his development? Has he ever been tested to see if he is missing a growth hormone?

We have made a very concious effort to provide the most calorie-packed diet we can. When his weight first became a major issue at the NICU follow-up clinic last spring, we met with a nutritionist who gave us quite a few tips on adding calories. We add butter and cheese to everything. We add half and half to his juice. We've tried supplementing with Pediasure, but he compensated for the extra calories by eating less. It's definitely a balancing act! The nutritionist strongly advised staying away from low or no calorie fruits and veggies in favor of fats and proteins. When I grocery shop, I look for specific foods for Ollie...the more calories and fat, the better! (It's been tough because I'm doing weight watchers. He's eating everything I can't!) I don't think his lack of weight gain is really due to a lack of caloric intake, but rather an overuse of calories due to fast metabolism, constant movement, and respiratory issues. (He has asthma and BPD). Yes, it is true that preemies don't really catch up to peers until age 8-10, but growth at this age is critical for lung and brain development. I guess my concern really boils to worrying that he's undernourished and that that will cause him some problems down the road.

hmmm I forget what I have read about when premies catch up to their peers in height/weight (though I thought it was by like age 10 or the teenage years)
Though I could be very wrong as its been awhile since I looked (since I looked at it when we thought we would need the info and it turned out we didn't).

Have you tried tracking his actual diet and daily routine? It just maybe that the foods he is eating while filling is not enough calories for what he's doing. I know both of my children live off of carbs (they would eat pretezals and crackers all day long day in day out if we let them) which helps offset their extremely active lifestyle. If anything, it would give you an idea of exactly how much he is consuming a day and what his output is (plus if may help you to see how much he is eating) and it would give your ped some more information to go on.
I know my oldest has a fast metabolism since he can eat a huge plate of food at dinner and then by chowing down a bowl of cheerios and hour later like he hasn't eaten in a week, but there have been many times were it doesn't seem like h is eating at all and my husband (yes its really my husband!) freaks out about it. During those times, recording everything Alex has eaten helps reassure my husband that the boy isn't starving. We have also tried to do this to look for foods we think he doesn't tolerate well (he at almsot 4 years old still has very loose BM's and we don't know why but may be getting close)

Thanks for the replies to my concerns. The stats I posted are for Ollie's corrected age. I can't even bring myself to look at his actual age! LOL!

The biggest frustration for me has been waiting for this magical "catch up" growth that we have all been lead to believe happens. I would guess that Ollie is supposed to be a big kid. My dh is 6'4" and I'm 5'7". Our oldest has always been off the growth charts for height and weight. I assumed that Ollie would be on the small side, but that he would eventually at least make it onto the charts. I would not be concerned if his weight gain had tapered off if he had been a decent weight to begin with. I understand that toddlers don't exhibit the same kind of rapid growth that babies do. Its just that at some point, he has to gain more rapidly to catch up to his peers.

I love our ped dearly, but I'm afraid that she hopes things will work themselves out and isn't as agressive as she needs to be. She was very concerned about his weight in September, but just assumed that he would begin to gain again when he restarted respiratory meds. He's never had any kind of testing done to rule out metabolic disorders, hypothyroid, etc. She didn't want to see him for any follow-ups and we weren't supposed to go back until April. I'm at a point now where I don't think hoping he gains weight is enough. I would like some kind of plan to deal with this, especially if the lack of gain continues. While he is certainly not a sickly or frail child, it is very worrisome every time he gets sick and drops a pound. He doesn't have it to lose!

Robyn,
I really doubt they would consider a G-tube this late in the game for your son. I am sure a lot of his issue not gaining weight is because he is active. My mom told me my brother only gained 4 lbs between 6 months and 2 years. Way back then the doctors were concerned because my brother was a full term baby. None the less, he grew up to be 5'8". That's pretty good considering my dad was 5'4" and my mom is 5'1".

The reason she told me this was because we are worried about our son. He turns one in a week and he is only at 15 lbs 4 ozs. The real problem is he has started to move around a lot and therefore, has only gained 3 ozs. in 3 weeks. He was gaining about a pound a month before. We have two issues with him, one he has a severe milk protein allergy. I still express my milk for him and I have to be very careful with what I eat or he vomits (it's not easy when you eat take out 3-4 times a week) Two, he was never fond of the bottle. He is doing OK with solids, but the GI doctor still feels that he needs to get his primary nutrition from milk. We may try the other way around though, because he is just so much easier to feed solids too.

I asked his GI doc if their was a secret weapon. The only thing we could do at this age is add extra scoops of formula to the EBM to add calories. But the hypoallergenic formual doesn't taste great, and he seems to eat less when we add. So, we are at a loss for now.

I would definitely talk to the Pedi about alternate foods you could give your son, now that he is 2 there may be some foods that could work. Our Pedi recommended avocado for us, which worked for awhile, until he decided they didn't taste good anymore.